What is Interstitial Cystitis/Bladder Pain Syndrome?
Interstitial Cystitis (IC)/Bladder Pain Syndrome (BPS) is a chronic pain condition that causes unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes.
IC/BPS was once seen as a rare condition but the amount of individuals with the condition is surprisingly high. It is said that over 12 million people in the United States alone have the condition – which means it is almost as common as heart disease and depression (Cozean, 2016).
Symptoms
- Urinary frequency (needing to urinate often)
- Urinary urgency (needing to urinate suddenly because of pain)
- Pain in urethra, lower abdomen, lower back
- Urethral burning with voiding
- Pressure and/or pain can be felt in pelvic/perineal area, groin, vulva/vagina and scrotum/testicles
Causes
There is no known cause and IC/BPS presents differently in many patients. In 2022, the American Urological Association led several efforts at a systematic review and classifying the different types of IC/BPS patients. They suggested patients fall within three distinct groups:
Interstitial Cystitis/Bladder Pain Syndrome Patient Groups or Subtypes:
Group 1 – Bladder Wall Driven:
Patients can present with inflammatory lesions on the bladder wall: Hunner’s lesions. These are wounds on the bladder that, when biopsied, show severe inflammation. Other bladder wall driven causes can be genitourinary syndrome of menopause, chemocystitis or chronic urinary tract infections.
Symptoms normally worsen with bladder filling and are reduced with urination. Treatment normally focuses on bladder behavioural training, diet modification, supplements and oral medications. These patients may be also receptive to bladder instillations with lidocaine.
Group 2 – Pelvic Floor Muscle Dysfunction:
These patients can present with muscular trigger points in pelvic floor, abdominal, low back or hip muscles which recreates bladder pain and sensations. Having a child, abuse/trauma, a car accident or a bad fall may cause the pelvic floor muscles to spasm and tighten around the bladder and pelvic nerves where it can cause bladder symptoms and pelvic pain.
Pelvic floor muscle physical therapy is now considered a gold standard therapy for IC/BPS patients and research studies have found it to be more effective than oral medications and/or bladder treatments for many patients.
Group 3 – Chronic Overlapping Pain Conditions
Patients struggle with more multiple pain conditions, other than just Interstitial Cystitis/BPS. Patients often suffer from Endometriosis, IBS, Vulvodynia, Prostatodynia, Fibromyalgia, TMJ and more.
Being driven by an underlying central nervous system dysfunction, treatment consists of patient education, behavioural modifications and stress management. A mind-body approach and techniques have become incredibly helpful for reducing the high levels of anxiety and catastrophic thinking found in this subtype due to their chronic pain.
Diagnosis
Many Interstitial Cystitis/BPS patients are not officially diagnosed until their forties due to many physicians believing it can only happen after the age of 35 or child birth. This unfortunately leads to years of misdiagnosis and incorrect treatment for so many.
Prior to the 2022 update of the AUA IC/BPS Guidelines, a diagnosis of IC/BPS was in many cases confirmed by lesions/glomerulations on the bladder wall seen in cystoscopy. The new guidelines have eliminated this diagnosis must-have because these lesions/glomerulations are not as unique as we once thought to IC/BPS. This is because they have been seen in other conditions and some bladders with zero symptoms.
Together, with your medical team (Urologist, Urogynaecologist, OBGyn, or Pelvic PT), you should:
Go over medical history
Your healthcare team should take a look at your medical history, including your symptoms, triggers, surgeries, pregnancies, falls or accidents, history of abuse, history of sports etc. They will need to know if you have other chronic pain conditions such as: IBS, Fibromyalgia, Endometriosis, etc. They may also ask if anyone else in your family struggles with IC like symptoms.
Pelvic Floor Muscle Examination
The pelvic floor muscles should be assessed (by a Pelvic Floor educated Practitioner) to look for tenderness and/or painful trigger points. If there are trigger points present, a referral to Pelvic Floor Physical Therapy is necessary.
*The pelvic floor supports the bladder, rectum, sexual organs and urethra. IC/BPS is deeply intertwined with pelvic floor dysfunction. Having tight, hypertonic muscles can sometimes be a root cause to many IC/BPS symptoms, like pain, irritation and frequency.*
Learn how Pelvic Floor Physical Therapy can help Interstitial Cystitis here.
After the evaluation, your doctor may request more testing:
Cystoscopy – This is a test where a camera looks in your bladder to rule out bladder cancer or stones + to look for IC Hunner’s Lesions.
Urodynamics – This tests how well the bladder, sphincters, and urethra are storing and releasing urine. The bladder is filled with water through a catheter to measure bladder pressures as it fills and empties.
Voiding Diary: Take home printable to evaluate your voiding patterns
Interstitial Cystitis Treatment + Alternative Therapies
Interstitial Cystitis/Bladder Pain Syndrome symptoms range widely from patient to patient and it takes a wholistic, Biopsychosocial approach to improve your symptoms and quality of life.
The Biopsychosocial approach suggests that our biology, thoughts, emotions, behaviours and social/cultural factors play an important role in healing overall human function when someone is living with chronic pain or illness. Using this approach in addressing and managing bladder symptoms shows promise in the treatment of IC/BPS.
Unfortunately, no one medication or therapy will cure or eliminate your Interstitial Cystitis pain and symptoms. You and your medical team should look at your case holistically and produce a customized treatment plan.
According to the AUA and CUA (American and Canadian Urological Associations) IC/BPS treatment should always start with conservative, least invasive therapies and if symptom relief is not reached, treatment should try less conservative therapies.
This treatment protocol was created with respect to patient safety.
Not one single treatment has been found effective for the vast majority
of IC/BPS patients; which means multiple trials and a combination of therapies
may be required to receive symptom relief.
Treatment Categories:
Behavioural/non-pharmacologic
- Pelvic Floor Physical Therapy
Physical therapy is now considered a gold standard therapy for IC/BPS patients and research studies have found it to be more effective than oral medications and/or bladder treatments for many patients.
- Patient education, behavioural modifications and stress management
- Water intake, Diet modification, Hot + Cold therapy,Meditation/Mindfulness, OTC Supplements, and Yoga
- Multi-modal Pain Management
Oral medicines:
- Amitriptyline
- Cimetidine
- Hydroxyzine
- Pentosan polysulfate (PPS)
- Oral Analgesics
© Michelle Milheiras 2020
Bladder instillations
- Dimethylsulfoxide (DMSO)
- Heparin
- and/or lidocaine can be considered
Procedures
- Cystoscopy with hydrodistention
- BTX-A (Botox)
- Neuromodulation
Copyright: © 2013 Levent Efe P/L – All rights reserved
Major Surgery:
- Substitution Cystoplasty
- Urinary diversion with or without cystectomy
A key takeaway when looking at IC/BPS treatment, is that almost always, physiotherapy combined with a holistic approach is needed to improve symptoms and get you on the right path to healing and living a better quality of life
Forming your healthcare team
Your Interstitial Cystitis/BPS healthcare team can consist of many medical doctors in various specialties such as Gynaecology, Urology, and Pain Management. But it can also consist of a variety of other practitioners such as:
- Physical Therapists
- Naturopaths
- Psychologist/Therapist
- Gastroenterologists
- Acupuncturists
- Chiropractors
- Pharmacists
- Nutritionists
You’ll likely want to research practitioners by going on online forums and communities and searching for the top IC Urologists in your area.
Then use Google, join Facebook groups, read peer-reviewed scientific studies, read the blogs of practitioners and others experiencing the same symptoms as you are.
Knowledge is power.
Check out The Happy Pelvis Resource page for helpful links, studies and blogs.
Now, once you have narrowed down your list, you can start by finding the one doctor who understands your conditions and pain most (the one you will see the most – does NOT have to be your “primary care physician”) and build your team starting there.
This is because like-minded doctors tend to network and know other like-minded doctors and practitioners. Their referrals can (sometimes) streamline your healthcare dream-team, saving you time and money.
Once you start working with a doctor you like and trust, they will be able to give you better guidance as to what other practitioners you may benefit from on your healing journey.
References:
Clemens, J., Erickson, D., Varela, N., & Lai, H. (2022). Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome. Journal Of Urology, 208(1), 34-42. doi: 10.1097/ju.0000000000002756
Hanno, Philip & Burks, David & Clemens, J Quentin & Dmochowski, Roger & Erickson, Deborah & Fitzgerald, Mary & Forrest, John & Gordon, Barbara & Gray, Mikel & Mayer, Robert & Newman, Diane & Nyberg, Leroy & Payne, Christopher & Wesselmann, Ursula & Faraday, Martha. (2011). AUA Guideline for the Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome. The Journal of urology. 185. 2162-70. 10.1016/j.juro.2011.03.064.
Can Urol Assoc J 2016;10(5-6):E136-55. http://dx.doi.org/10.5489/cuaj.3786 Published online May 12, 2016.
Cozean, N. (2016). Interstitial Cystitis Solution: A Holistic Plan for Healing Painful Symptoms, Resolving Bladder and Pelvic Floor Dysfunction, and Taking Back Your Life (1st ed.). Fair Winds Press.
Osborne, J. (2022, September 1) Press Release: IC/BPS No Longer Considered A Bladder Disease New AUA Guidelines Release Identify 3 Distinct Patient Groups. https://www.icawareness.org/wp-content/uploads/2022/08/pressrelease2022.pdf
Osborne, J. (2020, July 16). Interstitial Cystitis – IC Symptoms Treatments, Pain And Causes. Interstitial Cystitis Network. https://www.ic-network.com/
Nickel JC: Interstitial cystitis: a chronic pelvic pain syndrome. Med Clin North Am 2004; 88: 467.